Patient-Centered Medicine and PatientsLikeMe

There’s nothing futuristic about personalized medicine, but James Heywood, the chairman and co-founder of PatientsLikeMe, likes to pull a line from a futurist and science fiction writer to describe it.
“There’s a William Gibson quote that I think is appropriate,” Heywood said in a recent interview in anticipation of his talk at the Personalized Medicine World Conference 2012. “He said, ‘The future is here, it’s just not evenly distributed.’”

Clearly there is research being done that changes the ways patients are treated and the way scientists investigate disease, but most patients would be hard pressed to describe their brief encounters with their doctors as personalized.
More to Heywood’s point though is that the tools for making medicine more personalized are available, and yet they’re just not being used or at least not widely use.
For example, Heywood said that each and every clinical encounter between a doctor and a patient amounts to “a unique experiment.” The problem, Heywood said, is that it isn’t “computably recorded.”
In part, PatientsLikeMe is trying create the tools that allow for patients to share that kind of actionable information. The company creates communities of people dealing with the same illnesses and facilitates the sharing of information. 23andMe partnered with PatientsLikeMe, the Michael J. Fox Foundation, the National Parkinson Foundation and other organizations to help recruit patients to our Parkinson’s Research Community.
PatientsLikeMe collects information from its users so that they can share and learn from fellow patients. This allows them to learn about what they might expect as their illness progresses.
Heywood offered the example how for a short time lithium was used to treat ALS. The decision by patients and their doctors to use the drug came from a single small published study. But over time the experience of patients on the drug showed that the publication’s claims were untrue; lithium could not slow the progression of ALS. It was the patient-reported data from PatientsLikeMe’s ALS community that brought this serious problems to the surface. And for those in the greater ALS community, it warned them away from experimenting with the drug before a traditional research study was published telling them much the same thing.
That is how PatientsLikeMe is meant to work.
“The purpose is to provide meaningful data for patients,” Heywood said.
Users can see how others have reacted to different drugs used to treat their conditions and they can share their own outcomes. This information also connects researchers directly to patients, who can help improve the development of medicine, for instance. They can share that and their own experiences with doctors, he said.
More broadly, Heywood says that to create a truly patient-centered approach to medicine, we will have to begin to collect rich and vast sets of data.
Heywood started PatientsLikeMe with his brother Ben, in large part because of their brother Stephen’s diagnosis with ALS. The mantra for the company has been to answer questions that Stephen, who died in 2006, wanted answered as he endured the illness: “Given my status, what’s the best outcome I can achieve, and how do I get there.”